1. < Spine Health

Arachnoid Cyst

Posted by Kellyo @kellyo, Jul 22, 2011

Hi there, I am living in Ontario, Canada (although my profile lists an american state. There was no option for me to select a canadian province) and I am a 39 yr old woman. I have been diagnosed with an arachnoid cyst of the right posterior fossa which measures 2.1x1.6x1.6 cm.

The diagnosis came from an MRI after I started experiencing tingling and numbing sensations in my hands and feet. Well, later to follow was extreme fatigue, extreme burning pain in the base of my head and neck, behind my left ear, dizziness, light headedness, feeling like air is trapped inside my head, ears popping and buzzing, mood swings and i have had two episodes where I have almost fainted holding my baby.

I have seen one neurologist here in Ontario who tried to tell me i was pre-menopausal or depressed, neither of which is true. It seems like the medical profession here in canada do not recognize these tyes of cysts as being symptomatic, yet i have found thousands of people all over the world with the same cysts causing the same symptoms. It is so frustrating being told that my symptoms are "not likely" caused by this cyst, yet there has been no other medical reason found. The symptoms have progressivly gotten worse since I had my son, who is 20 mths old now. I am no longer working becuase the headaches and fatigue have become dibilitating. I want my life back!! I sleep endlessly during the day and night and feel as though my body just doesn't have enough energy to work for me. I am losing out on precious moments with my children and no one will help me.

If anyone out there has experienced teh same thing or help me in any way please contact me. i desperately need help.

I understand from my enormous research that I have done that these cysts are often triggered to be symptomatic after a c-section child birth (which is when this all happened for me) because of the epidural or spinal that has tapped into my spine because the cyst is near the top of my spinal cord and cerebellum. I also understand that neurosurgeons in other parts of the world are doing great things with these cysts.

thanks in advance to anyone that can help me.

Interested in more discussions like this? Go to the Spine Health Support Group.

em87 | @em87 | Jan 25, 2019
In reply to @kyoto "em87, that is great news. After surgery in July 2017, I finally got referred for an..." + (show)
@kyoto

em87, that is great news. After surgery in July 2017, I finally got referred for an EEG a couple of months ago, and it turned out that seizures were most probably causing my memory issues, even after the successful surgical resolution of my cyst about 18 months ago. In December, I got a tentative diagnosis of Transient Epileptic Amnesia ~ epilepsy limited to within the brain. I have been on drugs for this for a few weeks now, and I feel much sharper. It's not clear where this sprang from, but somehow it seems to be connected to the large cyst that I had. Doctors cannot tell me how long I had the cyst. But it is possible that it had been interfering with blood circulation ("vascular insufficiency"), which my reading tells me can be connected to (epileptic) seizures.
As time goes by, I notice more and more that my memory blanks go back several years. For example, I took my mother on a trip to Japan in 2013, but I couldn't recall it. My wife reminded me of it last week. When I cast my mind back before 2013, everything seems to be in place. I am 49, and I am confident that this is not early dementia. Moreover, the academic article I read on this said there that there is no evidence of a link between Transient Epileptic Amnesia and future onset of dementia. I guess it's kind of a mechanical issue that can be sorted out. The epilepsy medication I'm on now (Vimpat) has a very high rate of completely preventing the seizures. It's just I have to stay on it forever. Now I feel more comfortable with that.
To my surprise, it turns out that all forms of epilepsy occur in about 1% of the population. I just had no idea. Another interesting thing I read is that seizures can occur right after waking up, and that definitely happened to me. Has that happened with you too?
Good luck with this all. It has felt bewildering, but I am back in a good place now.

Jump to this post

I haven't actually noticed seizures. I have been having issues with forgetting what I'm saying in the middle of saying it, forgetting words and how to spell occasionally (I am an English major graduate), mental fog, going to retrieve an item and coming back with an odd item (ex go to get phone, come back with toilet paper), or completely forgetting how to do a task I've done a million times. There are more examples, but if I'm having any, it would have to be the silent ones.

REPLY
kyoto | @kyoto | Jan 25, 2019

That didn't quite happen to me. I didn't forget what to say in the middle of a sentence, but I would repeat myself during a conversation which people, including my wife, reported that they found strange or alarming. I didn't have examples of what you mentioned about failing at things I'd done so many times. In my case, I have always been almost completely unaware of my seizures. The times I can remember are waking up and being confused. It happened on a plane. I woke up and had no idea where I was going or why I was there (I was going home). Maybe it was the consternation of that which is why I remember it. In many cases, it is much more mundane, and perhaps for that reason, I just don't notice while it's happening. At any rate, my wife is very positive about my improvement over the last month.

REPLY
1 reply
susie2525 | @susie2525 | Feb 9, 2019

Hi i have a pineal cyst 2.2 cm round. I have same exact symptoms. Living in black and white... Apathy fatigue; numbness; memory loss...brain damage, although cyst is close to aqueduct of sylvius they say its not stopping circulation yet. I know how you feel. Dr. Minimized all my symptoms which i wrote down. Psychological and biological. Saw a cardiologist who said nothing was wrong with heart but arrhythmia. I know its the cyst. Hormone imbalances run in my family. My mother was going insane at the same age as I...early 40s after giving birth to me. My father and i took care of her i was 12. Screaming episodes, early dementia (later on); paranoia... but drs couldnt exactly pinpoint any firm diagnosis i was overseas in Europe...90's. Living like this is not life. No energy or motivation and no one to talk to that believes you. I always feared ending up like her. Never understood why she was in bed all day. Now i do. I pulled her records, and my sister also has one and am going to see a neuropsycologist and a university neurosurgeon. We all have cystic fybrosis in our ovaries, i had an hemangioma the size of a grapefruit when i was little, it was removed. They say pineal cystic tumors are not hereditary. I beg to differ. Has to be some hormonal imbalance...testosterone perhaps. I see the same symptoms ...different variations... In so many people. I hope the 2 drs i chose can help. Your case was in 2011 in Canada how did it turn out? Im starting to lose hope. And even if removed, the pineal gland goes with it. Does that mean sleep disorders; fatigue and catatonic depression will remain ? Pineal gland secretes melatonin which metabolizes into serotonin, it governs curcadian rythms amongst so many other things... Are we damed if we do damned if we dont?

REPLY
1 reply
Ethan McConkey, Moderator | @ethanmcconkey | Feb 10, 2019

Hi @susie2525 and welcome to Connect. It must be so exhausting to go through all these illnesses, on top of the arachnoid cyst.

I wanted to introduce you to @cmay5691@em87 @kyoto @johnbishop @bessiealice and others as they have all mentioned acrachnoid cyst's in the past and may be able to offer you support.

Back to you @susie2525 how have you been treated so far?

REPLY
1 reply
susie2525 | @susie2525 | Feb 10, 2019
In reply to @ethanmcconkey "Hi @susie2525 and welcome to Connect. It must be so exhausting to go through all these..." + (show)
@ethanmcconkey

Hi @susie2525 and welcome to Connect. It must be so exhausting to go through all these illnesses, on top of the arachnoid cyst.

I wanted to introduce you to @cmay5691@em87 @kyoto @johnbishop @bessiealice and others as they have all mentioned acrachnoid cyst's in the past and may be able to offer you support.

Back to you @susie2525 how have you been treated so far?

Jump to this post

Hi Ethan, i have a pineal cyst but not of the arachnoid variety (that i am aware of). However my symptoms are similiar to to other members with this type. If you could connect me with individuals that have pineal cysts also that would be great. Thank you so much.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 10, 2019
In reply to @susie2525 "Hi i have a pineal cyst 2.2 cm round. I have same exact symptoms. Living in..." + (show)
@susie2525

Hi i have a pineal cyst 2.2 cm round. I have same exact symptoms. Living in black and white... Apathy fatigue; numbness; memory loss...brain damage, although cyst is close to aqueduct of sylvius they say its not stopping circulation yet. I know how you feel. Dr. Minimized all my symptoms which i wrote down. Psychological and biological. Saw a cardiologist who said nothing was wrong with heart but arrhythmia. I know its the cyst. Hormone imbalances run in my family. My mother was going insane at the same age as I...early 40s after giving birth to me. My father and i took care of her i was 12. Screaming episodes, early dementia (later on); paranoia... but drs couldnt exactly pinpoint any firm diagnosis i was overseas in Europe...90's. Living like this is not life. No energy or motivation and no one to talk to that believes you. I always feared ending up like her. Never understood why she was in bed all day. Now i do. I pulled her records, and my sister also has one and am going to see a neuropsycologist and a university neurosurgeon. We all have cystic fybrosis in our ovaries, i had an hemangioma the size of a grapefruit when i was little, it was removed. They say pineal cystic tumors are not hereditary. I beg to differ. Has to be some hormonal imbalance...testosterone perhaps. I see the same symptoms ...different variations... In so many people. I hope the 2 drs i chose can help. Your case was in 2011 in Canada how did it turn out? Im starting to lose hope. And even if removed, the pineal gland goes with it. Does that mean sleep disorders; fatigue and catatonic depression will remain ? Pineal gland secretes melatonin which metabolizes into serotonin, it governs curcadian rythms amongst so many other things... Are we damed if we do damned if we dont?

Jump to this post

Hi @susie2525, I would like to add my welcome to Connect along with @ethanmcconkey and other members. It's hard to imagine how difficult it is dealing with the illness and different symptoms you have. I'm hoping you find something that helps for treatment. I found some interesting reading on Pineal Cyst disease with a lot of references and links that may be helpful.

Pineal Cyst disease: Malacards - Research Articles, Drugs, Genes ...
-- https://www.malacards.org/card/pineal_cyst

Here are a few more...

Shining new light on the pineal gland - July, 2018
-- https://www.sciencedaily.com/releases/2018/07/180705100409.htm

Clinical management of pineal cysts: a worldwide online survey - PDF
-- https://www.researchgate.net/publication/295241831_Clinical_management_of_pineal_cysts_a_worldwide_online_survey

REPLY
Lisa Lucier | @lisalucier | Feb 13, 2019
In reply to @susie2525 "Hi Ethan, i have a pineal cyst but not of the arachnoid variety (that i am..." + (show)
@susie2525

Hi Ethan, i have a pineal cyst but not of the arachnoid variety (that i am aware of). However my symptoms are similiar to to other members with this type. If you could connect me with individuals that have pineal cysts also that would be great. Thank you so much.

Jump to this post

Hi, @susie2525 - I'd like to add my welcome to Mayo Clinic Connect. That is very challenging to be dealing with apathy, fatigue, numbness and memory loss, and even more so, to feel that your symptoms have been minimized.

I wanted to offer this Mayo Clinic article on pineal cyst https://newsnetwork.mayoclinic.org/discussion/pineal-gland-cysts-are-common-but-dont-normally-cause-headaches/

I'd also like to invite you to start a new discussion specific to pineal cysts in the Connect Brain & Nervous System group https://connect.mayoclinic.org/group/brain-and-nerve-diseases/. Directions for starting a new discussion are on this page, under "How to Start a New Discussion." https://connect.mayoclinic.org/get-started-on-connect/

REPLY
jseibert | @jseibert | Feb 13, 2019

My daughter was recently diagnosed, with arachnoid cyst as an incidental find. Seeing her symptoms and call it mom’s instinct. I feel that she is struggling from the cyst. We had a CT, saw a neurosurgeon and a PA of a neurologist at UW Madison. They feel it’s migranes and want to keep an eye on it and do a scan in 6 months. Meanwhile my daughter has had a headache since Jan 7th feels dizzy and pressure on her head. We want to have an MRI ran and no one thinks its necessary. We were at ER twice last week for a migraine cocktail and the following day for more meds in IV. Both provided relief which lasted about 2 hrs. I called the UW daily last week and got no where. She never had migraines and is drinking plenty of water. She’s missed school for 3 weeks now and we are at wits end trying to get a doctor or nuerologist to do more. Any help or suggestions.

Thanks,

Jen

REPLY
2 replies
Ethan McConkey, Moderator | @ethanmcconkey | Feb 13, 2019
In reply to @jseibert "My daughter was recently diagnosed, with arachnoid cyst as an incidental find. Seeing her symptoms and..." + (show)
@jseibert

My daughter was recently diagnosed, with arachnoid cyst as an incidental find. Seeing her symptoms and call it mom’s instinct. I feel that she is struggling from the cyst. We had a CT, saw a neurosurgeon and a PA of a neurologist at UW Madison. They feel it’s migranes and want to keep an eye on it and do a scan in 6 months. Meanwhile my daughter has had a headache since Jan 7th feels dizzy and pressure on her head. We want to have an MRI ran and no one thinks its necessary. We were at ER twice last week for a migraine cocktail and the following day for more meds in IV. Both provided relief which lasted about 2 hrs. I called the UW daily last week and got no where. She never had migraines and is drinking plenty of water. She’s missed school for 3 weeks now and we are at wits end trying to get a doctor or nuerologist to do more. Any help or suggestions.

Thanks,

Jen

Jump to this post

Hi @jseibert and welcome to Connect. You may have noticed that I moved your post to this existing discussion on Arachnoid Cyst so that you can connect with others who have experience with arachnoid cysts. Click VIEW & REPLY in your email notification to find your post and join the conversation.

I also wanted to share these relevant discussion that you may find helpful.

- Desperate to find a dr. who treats arachnoiditis: https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/
- Arachnoiditis: https://connect.mayoclinic.org/discussion/arachnoiditis/

It must be awful to see your daughter like this. I wanted to introduce you to fellow Connect members @cmay569 @kyoto @johnbishop and @bessiealice as they have mentioned arachnoid cyst's before and may be able to offer you support.

Back to your daughter @jseibert is your daughter able to do anything while she is out of school like school work? Or is she unable to do anything?

REPLY
1 reply
em87 | @em87 | Feb 13, 2019
In reply to @kyoto "That didn't quite happen to me. I didn't forget what to say in the middle of..." + (show)
@kyoto

That didn't quite happen to me. I didn't forget what to say in the middle of a sentence, but I would repeat myself during a conversation which people, including my wife, reported that they found strange or alarming. I didn't have examples of what you mentioned about failing at things I'd done so many times. In my case, I have always been almost completely unaware of my seizures. The times I can remember are waking up and being confused. It happened on a plane. I woke up and had no idea where I was going or why I was there (I was going home). Maybe it was the consternation of that which is why I remember it. In many cases, it is much more mundane, and perhaps for that reason, I just don't notice while it's happening. At any rate, my wife is very positive about my improvement over the last month.

Jump to this post

I had my eeg done and it came back normal. My next step is the neurosurgeon on the 27th. I still don't know why I'm so forgetful and feel like I'm walking around in a fog. It's very strange feeling. I just want to be me again.

REPLY
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